autoimmune research, patient stories

Tinkering and Tweaking with Self Care

By Tiffany Simms, Bonnie Feldman, and Ellen M Martin

While we wait for traditional medicine to catch up to our needs, will integrative practices be the way to go?

Following LillyJulie, from It’s Just a Bad Day, further emphasizes how diet and lifestyle modifications have significantly improved her autoimmunity.


 

Having done so much research on autoimmune diseases, I can’t help but realize all of these gut problems HAVE to be linked to my arthritis. There are many research studies out there that show a link between a leaky gut and autoimmunity. I’ve now made it my mission to clean up my gut. October 2013 I embarked on dietary changes, which I’ve seen drastic improvements from. Every month I seem to be gaining more and more energy. My hope is to repair my gut lining, stop the progression of my current autoimmune disease and prevent the onset of any new autoimmune disease!


–What would you like to see more of from your healthcare giver?– 

I would like to see more validity given to the other symptoms my autoimmunity causes – fatigue, malaise, etc. I often feel that these symptoms aren’t given enough attention. Many of my doctors just shrug it off and say there’s really not much that can be done about it, but I’ve found that to be simply untrue. There are many dietary and lifestyle changes that can be made to help manage these symptoms. I wish more patients understood this and knew about it.

–Have you experimented with diet? How has your diet helped you?–
There is not enough emphasis stressed on this change. Before I made the changes I was in bed 4-5 days a week, I had no energy, aches, pains, brain fog, you name it. Since making changes a year and a half ago, I now spend maybe 1 day a week in bed, have so much more energy, have gotten my inflammation down to an almost normal level and can concentrate SO much better. Don’t get me wrong, I still have bad days, but they’re a lot less frequent.

I first cut out – gluten, dairy, soy, corn, sugar, red meat, shell fish, alcohol, nightshade veggies, citrus and avoided GMOs and processed foods as much as possible.

Then, after trying to reintroduce them after 8 weeks, I continued on with the eliminated items for another 10 months. I had improved dramatically, but felt like I had reached a plateau and knew I still needed to do more. In October 2014, I omitted all grains and tried the paleo lifestyle. The first month I had NO energy at all. I mean, NONE. But then, something amazing happened. I started feeling the best I’ve felt in years. I’ve added fresh juices and smoothies to my diet and try to avoid sugars (honey, maple syrup, etc) as much as I can.

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I’ve also added a regular yoga and meditation practice to my life as well. It’s been amazing to see how both of these have helped me calm down my nervous system, get my joints and body moving and improve my piece of mind!

I do not feel there is a one diet fits all solution, I truly believe that every single body is different. I always suggest to my clients and other patients that they go on an elimination diet to identify trigger foods for them. The autoimmune paleo protocol has worked for so many people out there, but I need to limit my red meat intake. I can feel it in my joints if I have red meat. If there was only one thing I could tell patients, it would be to complete an elimination diet and move towards an anti-inflammatory diet.

We may not be able to “cure” autoimmunity just yet, but getting our immune system in check is an amazing way to help manage your disease.

–How would the use of health & wellness type apps help you in your everyday life?–
I use meditation apps almost every day. Headspace and Buddhify are my two favorites. I suggest My Plate or My Fitness pal to those who want to keep track of what they eat and move towards a more anti-inflammatory diet. There are also many apps that help keep track of flares and things like that, but I rarely use them. I actually have my own spreadsheet that I track my symptoms, food and activity levels. I’ve found it to be quite beneficial to identify links between fatigue, pain and external variables.


What integrative practices are working for you? Are they the same as Lilly and Julie?  

We are looking for Autoimmunity stories for an upcoming workshop at Stanford Medicine X. If you would like to lend us your voice, send us an email! DrBonnie360@gmail.com

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